Reflections on the patient experience

Reflections on the patient experience

It is hard for me to believe that it has been 7 years since I lost my best friend to cystic fibrosis. As time has gone by, the pain has fallen a few layers below the surface, but it only takes writing the first sentence of a blog post for tears to well up in my eyes.

When my college application essay asked about the person who had the biggest influence on my life, at 16 years old, I wrote about her. Today, when I think about what drives me to work so hard on behalf of patients and their caregivers, I think about her and her amazing family.

I spent my high school years by her side—we alternated between the pediatric floor of Fletcher Allen Hospital in Burlington, VT, and bonfires with friends on the shores of Lake Champlain. When she came to visit me at college, I gave her chest PT before we headed out for the night. When I was in grad school, she had lung transplant. I may have been accumulating degrees, but I was learning everything that I really needed to know by knowing her.

Our friendship was the defining experience of my life—both personally and professionally. Personally, it taught me to try really hard not to take my loved ones for granted. Professionally, it gave me the ability to empathize with patients and families who have learned to not only adapt, but also to thrive despite ongoing challenges and setbacks.

Each patient’s experience is as unique as the person experiencing it. However, personally and professionally, I’ve encountered some seemingly universal truths.

1. Patients crave honesty. Straight talk—delivered with compassion—is preferred.

2. Finding another person who “gets” what you’re going through can make going through it a bit easier.

3. Caregivers offer tireless love and support to others, but caregivers need hugs too.

4. Laughter feels really good, (even if it triggers a coughing fit as it did in the case of my best friend).

Keep these thoughts in mind as you embark on your patient communication programs in the New Year. And join me and The Patient Experience Project in making 2015 The Year of the Patient.

Happy 42nd birthday, Shannon. I miss you.